Patients' experiences of responding to a Patient-Reported Outcome Measure for palliative care: a mixed method study

BACKGROUND: Worldwide, there is growing interest in using Patient-Reported Outcome Measures (PROM) in palliative care. The Danish Health Data Authority has developed a new PROM called PRO-Pall, which was launched for nationwide use in patients with heart, lung, and kidney diseases, as well as cancer.

AIM: To explore patients' experiences of responding to the PRO-Pall and using it in a consultation about palliative care needs in non-specialised palliative care settings.

METHODS: This is a multicentre, mixed-methods study combining a quantitative approach using structured questionnaires (n = 270) and a qualitative analysis based on semi-structured interviews (n = 17). The quantitative survey included items assessing relevance, ease of use, and perceived benefits of PRO-Pall in preparing for consultations. Qualitative data collection involved interviews focusing on patients' experiences with PRO-Pall and its integration into clinical discussions. Quantitative data were analysed descriptively as numbers (n) and proportions (%), while qualitative data were analysed using thematically using to identify key themes.

RESULTS: A total of 270 patients completed the survey, and 17 patients participated in interviews. The analysis revealed that the patients evaluated the PRO-Pall positively. The patients strongly agreed or agreed that the PRO-Pall was relevant (85%), easy to fill out (85%), helped to become aware of symptoms (61%) and a good way to prepare for the consultation (70%). The qualitative findings further supported these results, highlighting that patients found PRO-Pall relevant, appropriate, and convenient. Participants emphasized that PRO-Pall responses should be actively discussed during consultations with healthcare professionals to enhance its impact. Additionally, they noted that the timing of completing PRO-Pall was crucial, as patients' conditions fluctuate over time, potentially influencing their responses.

CONCLUSION: Most patients found the PRO-Pall relevant, appropriate, and easy to fill out. However, its effectiveness depends on healthcare professionals actively integrating patient responses into consultations. Otherwise, it would serve merely as documentation rather than an avenue for patients to discuss their concerns.